I have Angioimmunoblastic T-Cell Lymphoma. Very rare. Looking for someone that has this same disease and if they have experienced the symptom of nasal congestion? Also would like to here from anyone who has this disease because of how rare it is.

Hi, My fiance was diagnosed

Hi, My fiance was diagnosed in June to Angiommunoblastic T-Cell Lymphoma. It is very rare. We are in RI, and John has received excellent care at The Miriam Hospital/Fain Center.
He has had 6 chemo treatments. He just had his last one on Thursday and has been doing great! He just had a PET Scan, which came back clean, and he will be going for a bone marrow test tomorrow and then he will be having a bone marrow transplant in Nov.
When John was diagnosed in June, he started off in March or April with a sinus infection, which lead him to the dr's, his lymph nodes were the size of golf balls. He had a biopsy done of one in his neck. I will be perfectly honest it took the dr's a good 2wks before they came up with this diagnosis. He was seen by specialist, that flew into Miriam Hospital, due to the fact that this is a rare form of cancer. I can try to ans questions for you. Ask away..I know it is scary. Catherine, RI

Did your husband had the

Did your husband had the transplant; if so can you tell me what your & your husband experiance was like and what the sucess was for this procedure

SN

Hi Catherine...My Dad was

Hi Catherine...My Dad was diagnosed on Dec 24th of 2008 with this type - very scary as not too many people have this type...he is almost 77 and went thru 18 weeks of Chemo - hes had all clean scans but with each scan there have been increased spots on his lungs - now he is getting a biopsy on his lung on sept 30th - he's also had a cough - so not sure if these are fungal spots or if the Lymphoma is now in his lungs - being treated at Mass General and so hopefully they're just fungal spots - how is oyur fiance doing? PS - No nasal congestion - he had sore joints, night sweats and checst pain - (which was lymph nodes blocked causing the chest pain - )

Beth Rogers

Hello, John, (fiance), is

Hello,

John, (fiance), is doing great! He truly is a remarkable man. He went thru 6 treatments of CHOP, including the Prednisone, it worked! John has gone for a CAT, PET and Marrow test, they all came back CLEAN! However, his doctor has ordered a bone marrow transplant in order to increase John's survival rate and the cancer NOT to come back.

Mass General GREAT hospital. This is their field of speciality. John will be having his transplant done in MA, at Dana Farber in Nov.

Hope your Dad is doing better. It takes time and faith.

Take Care,
Catherine
Rhode Island

My father in law was

My father in law was diagnosed back in February with Angioblastic T-Cell Lymphoma. He too had his bone marrow tested and did not have it there. At the time the doctor recommended 6 sessions of CHOP with the Prednisone given intermittently. He had a scan after the 4th treatment and it looked great, the lymph nodes shrunk etc. At this point he returned to the UK (he has a home in Florida and England). He finished his last two Chop treatments and was hopeful. He then landed in the hospital because he had low blood pressure and anemia and collapsed (I think its called syncope)?? At that time they did a scan and saw something suspicious so the ordered a PET scan. Unfortunately, the lymphoma had returned with a vengeance. It was now a stage IVb, and had spread to his bones, bone marrow and lungs. They gave him a now terminal diagnosis. They said he now has 3-5 months with no treatment or aprox. 10 months with oral chemo, pred and some other meds. He opted for that and again wound up in the hospital for syncope. Now he is off all the chemo meds because he had an upper respitory infection, and had to go on antibiotics.

He hopes to return to Fla in November. We have been in contact with Tampa Moffit and MD Anderson in Texas. We feel at a loss and haven't meat anyone else with this condition. We feel like a clinical trial is our last hope.

My F.I.L. has felt so weak since just before diagnosis and had had 3 or 4 transfusions..What is your next step/option???

My brother was diagnosed with

My brother was diagnosed with Angioimmunoblastic Lymphoma today. He has been very sick for the past several weeks - night sweats, high fever, and a spleen that has swollen to 3 to 4 times its normal size. I have been trying to gather information but not much and what there is is pretty grim. They started him on Prednisone and CHOP sessions today. The doctor said it is very rare and not much is known about it and not much research is ongoing. Has anyone found any good info.

I am very sorry to hear about

I am very sorry to hear about your brother.
Where are you located?? How old is you brother?? From the research I have done, It seems to point to a stem cell transplant or clinical trials as having the best rate of success. Not sure this helps...

Good Luck -

Tara

My boyfriend was diagnosed in

My boyfriend was diagnosed in June with Angio. T-Cell Lymph. He had the EXACT symtoms your brother.
Please contact Dr. Castillo, he is my boyfriends doctor. He is excellent. He literally brought my boyfriend (John) back from the dead. John's blood level at the time he went into the hospital was a 3! Unheard of for a man, he should have been dead. John went through 6 treatments of CHOP, he just finished his last treatment a couple of weeks ago. Had a CAT Scan, PET Scan and marrow tests...all CLEAN. However, the doctor has ordered John to have a bone marrow transplant. This will increase John's odds, and for the cancer NOT to return into John's body.
Dr. Castillo, is with the Fain Center, at the Miriam Hospital, in Rhode Island. He is a specialist in his field, well known, well credited. He is actually doing a medical journal on John and this disease.

Good Luck, and God Bless!
Catherine
Rhode Island

Having been in remission for

Having been in remission for eleven years with angioimmunoblastic lymphoma. It is rare, although not as much as you think. It is often misdiagnosed. Doctors don't tend to know much about it and how to describe things to you. You need to talk to your oncologist and demand idiot boards. if you don't understand then ask another question. you are in control of your treatment and the treatment goes better if you are in on the desicion side of things. Some really good information is available from lymphoma research foundation http://www.lymphoma.org/atf/cf/%7B0363CDD6-51B5-427B-BE48-E6AF871ACEC9%7.... If you want to find out about this inconvenient little bugger, follow the links from standard NHL in wikkipedia. But be warned the internet has a habit of leading you all over the place and can be quite frightening. As a medical writer and researcher I will try to point you in the right direction as I understand the technical terminology.

Christiaan von Hohenzollern
christiaan@plusve.co.uk

I had angioimmunoblastic T

I had angioimmunoblastic T Cell Lymphoma in 1997 at the age of 49. I had 8 sessions of CHOP chemo along with predisone therapy. In 1998 I had a stem cell harvest at Northwestern Hospital, Chicago, but was lucky enough not to have to use them. I have been cancer free since June, 1997.

I want to encourage all who are angioimmunoblastic patients. I don't care what the books say, you can survive!!

Just diagnosed. had a Pet

Just diagnosed. had a Pet Scan; will have an MRI and bone marrow biopsy next week- would you share what stage you were dignosed with? Did you lose your hair? At what point in the treatment did you get nauseus? I believe I will be starting the CHOP soon. Thanks!!

Eliz Lane

I am 18 years old and in the

I am 18 years old and in the process of being tested for lymhpma. i also have nasal congestion...

Hello, I am Female 33yrs old.

Hello, I am Female 33yrs old. All of the articles I have read about Angioimmunoblastic T Cell Lymphoma since I was diagnosed after a visit to the Mayo Clinic in Jacksonville, FL have indicated that this very rare non-hodgkins lymphoma happens to men, usually in their 60's.

I was diagnosed on Nov 13, 2009 after pathology from the removal of 2 golf ball sized lymphnodes (tumors) from my neck came in. I became ill the last few days of the month of Aug 2009, thinking that I had a sinus infection. After going to my P Physician, she drew blood, lots of it and it came back abnormal, my lymphocites were abnormal as was the rest of the CBC. I ended up in the hospital as I had become so weak that I could hardly walk.

The lymphnodes in my neck and the back of my head just kept getting bigger and bigger and hurt more and more. In the hospital in IL they could not figure out what was wrong with me, I ended up with an Infectious disease doctor and they ran every test on me. Could not find anything. I was released the next day.

Eventually, I received a needle biopsy and was told that I did not have cancer. After going from specialist etc..And getting worse I decided to try and get into the Mayo Clinic, my Dr. faxed the Mayo Clinic my info and to my surprise they called me the next day. I flew with my mother the following week to Florida. I was in Fl from October 22 to Nov 2nd, 2009 at the Mayo Clinic going thru every test I had already been thru to having a full removal biopsy of two of my lymphnodes from my neck.

After finding out that I had angioimmunoblastic T Cell Lymphoma I went to an oncologist that specializes in that here in IL. On Nov 27th after a bone marrow biopsy, I was diagnosed Stage 3. Tests showed that after my 2nd chemo that my cancer was gone, I am in remission. I had my last of 6 CHOP chemo's on March 10, 2010. I will under go one more Chemo and then STEM cell replacement using my own stem cell's. My Oncologist said this should assure a complete remission. PLEASE NOTE: This is a very aggressive cancer. This cancer also happens to be one of the most painfull amongst all cancer's.

Keep the faith and have a good attitude. Fight the good fight and know that you will beat this thing.

I hope you all have been

I hope you all have been doing well and on the right road to remission! I posted back in September about my Father in Law and his condition. I have not posted in a long time...unfortunatly, my FIL passed away in January. It was a blessing for him as his quality of life was no longer existant. He was only 72...to young ...

The only advice I can give after seeing how this disease works is try EVERY option available to you, especially the clinical trials....be on top of your own disease, because you have to be your own advocate...good luck everyone!! I wish you all the best and pry for you all the beat the shit out of your cancer!

BAM BAM - I am so sorry to

BAM BAM -
I am so sorry to hear about your FIL - 72 is way too young - I havent posted either in a while..
Update - my dear Dad is battling on....about 3-4 mo ago he received the news that there was no lymphoma in his body - and docs technically said he was in remission - much great news we needed. This news came following another new targeted round of chemo - ONTAC -? that was focussing on the lymphoma in his lungs - so in the middle of that treatment was when he got the news. no sooner did that news come it was met with him catching an pneumomina that placed him in Mass Gen for another 9 days - he beat that!! he was close tho - was given his last rights in all - but so he's on his 7thlife right now - it's a constant up and down battle with this nasty disease and we the fam just ride along with it - is very tough to see a beloved parent go thru all this -
Kjerstin - keep marching forward - and bless each day and moment you have -in my thoughts -

Beth Rogers

Beth- I am glad your dad

Beth-

I am glad your dad is seeming to fight this nasty cancer. I hopehe continues to kick its butt!

Tara

Thanks Tara - you too!!!

Thanks Tara - you too!!! Sounds like you have the correct frame of mind............
My Best
Beth

Beth Rogers

I am new to this site and

I am new to this site and have just read all of the posts. My prayers go out to everyone. I have Anaplastic T Cell Lymphoma but the latest biopsy came back as Anaplastic Large Cell Lymphoma. I have no idea what the difference might be? I am going to the University of Michigan hospital next week to try and get better answers. To date all my doctors have done is cut out the affected area and radiate it. What I didn't mention is that all of my cancer has been in my skin (very rare). Has anyone else ever heard of or had any experience with this? What was your treatment? Also, the post regarding the nasal congestion really got my attention. I have chronic sinus problems (and sinus infections) that no drugs or sprays have been able to conquer. I never thought of connecting the two. I am going to mention this to my UofM doctor to see what he says.

BGrobert: There's no

BGrobert:
There's no difference between anaplastic t-cell lymphoma and anaplastic large cell lymphoma. anaplastic large cell lymphoma usually just means it's an NHL affecting the T-cells.

Terms like "anaplastic" (means the cancer cells don't look like healthy cells and that they divide quickly) and "large" are merely descriptors.

In short, the most likely answer is that two different people are using the terms interchangeably. It's probable that nothing about your dx has changed.

Since yours is restricted to the skin, you may have a rare form known as primary cutaneous anaplastic large cell lymphoma (PCALCL)--- "primary" here refers to the place where the cancer started, and for you that's in the skin (cutaneous).

If I were you I'd go to the Cutaneous Lymphoma Foundation and download their 'fast facts' PDF on PCALCL.

Ross

I was diagnosed with

I was diagnosed with Angioimmunoblastic T-Cell Lymphoma in July '06 at the age of 43. I had trouble getting doctors to even diagnose my problems. I was tired all the time, was having night sweats, major headaches, swollen lymph nodes, couldn't sleep, couldn't breath, developed a rash over my entire body and was in terrible pain. I was finally admitted to the hospital and put into isolation. They had no clue as to what I might have and ran test after test. Finally they did a biopsy on the lymph node in my neck and 14 days later gave me the diagnosis. I was told by my oncologist that I had 5 years to live and that I was between a stage 3 & 4. It was recommended that I do R-CHOP. I was to go in for classes on therapy and decided that not to go through with it. I was lucky and 6 months later was in remission. In Febuary of '09 I was hospitalized again. I was supposed to keep seeing my Oncologist but lost my health insurance in May '09. I am still tired all the time, my lymph nodes in my neck are visable and am suffering from night sweats and headaches. Without insurance I can only go to the county hospital and believe me its better to be at home then there. I am glad that I have found this site as I can atleast know that I am not alone. Has anyone else had a body rash?

What you experienced is

What you experienced is normal, however you should have gotten a second opinion I had a team at Mayo's that specialize in this lymphoma. CHOP therapy then Stem cell replacement using only your stem cell has had the best out come of staying in remission for life.

As far as a rash, that is part of this lymphoma. With me it happened with my legs. I got 3 very painful rashes on one leg and 4 on the other all verying in size. My oncologist put me on medication and it finally went away once I was in remission, however the rashes that I had still left small scars.

Keep the faith! BTW, you need to research your state and find out about getting financial assistance with your medical bills, apply for public aid, charity assistance through hospitals, even the lymphoma society will give you a little bit of assistance but some is better than none. I am currently classified as disabled and am on social security disability for at least 3 years. There is financial help out their, you just have to look for it. I wish you much luck!

S Moreno- So wait a second,

S Moreno-
So wait a second, did you undergo the RCHOP chemo regimen or not?

And by rash do you mean an itching?

Ross

No I did not go through the

No I did not go through the R-Chop.

A red rash over my entire body that was under the skin and yes it hurt and itched.

Beth (Sealot) Thank you very

Beth (Sealot) Thank you very much for your comment it means more than you know.

Update: I started my stem cell harvest this past Monday. From Monday to Wednesday they were only able to harvest 401,000 stem cells....this process takes 4 hours on a machine. They have to be able to harvest at least 2 million to 5 million stem cell's (on normal people it usually takes 4 to 5 days to complete. The shot they have me on called Neuopegin apparently is not working on me because I am so small. I am 5 foot tall and don't even weigh 100 lbs. I never have even before getting cancer. In any event I was told yesterday that they have to put it on hold and order me some new drug to try and get my stem cells to release into my blood stream so they can harvest them. (This process is basically dialysis only just for harvesting stem cells.)

GOOD LUCK TO ALL WITH YOUR

GOOD LUCK TO ALL WITH YOUR BATTLE!! Keep kickin cancer's butt.

kjerstin, thanks for your

kjerstin, thanks for your assistance. I will look into everything and see what I can do.

As for my rash it was all under the skin the first time so no scars once it was gone, was totally different the second time, was on-top of the skin and was even on the bottoms of my hands and feet. Both itched and hurt.

The first labwork was done in Los Angeles, Stanford and at the National Cancer institute. The second biopsy was done by Stanford all confirmed the diagnosis of the lymphoma.

I didn't like the first oncologist I had at Palo Alto Medical Group (Sutter Health), so went to Stanford and was very pleased.

Thanks to everyone on this site - its good to know I am not alone.

Moreno- Congrats, especially

Moreno-
Congrats, especially on dumping an oncologist you didn't like and finding one that you do. Many people will stay with the same doc even though they don't like him or her; provided - like you - you find another one at a highly qualified facility like Stanford, switching is most often the right thing to do.

Ross

Dear S Moreno, The importance

Dear S Moreno,

The importance of a second opinion cannot be overemphasized.

In any case, may I suggest that you refrain from eating food that supposedly feeds a cancer. [Stop milk and milk products, meat and sugar]. Also don’t take alcohol which burdens the liver and keeps the body more acidic which is the environment disease thrives in.

For protein I suggest you eat fish, which originally had scales and fins, because those are not toxic to the body. Also chick peas and lentils.
[Stop seafood like prawns, shrimps, cuttle fish and crab and fish which originally had only skin (no scales) like shark, dolphin and some types of tuna.
Aviod pork and pork products like poison.]

Moreover please drink enough fluid; water and fresh fruit juice (including those that contain VitaminC which helps the immune system). SourSop fruit helps keep body cool (as some would say), meaning less acidic. Include green tea.

Three years after my last Chemo (6th R-CHOP) for DLBCL I still take two stalks of Asparagus every morning before breakfast. I also consume muesli with soya milk for breakfast. Oatmeal is also fine.

Another suggestion is that you stop using devices that use electromagnetic radiation (mobile phones, cordless phones, wireless internet connections, etc). Keep well away from them.

Finally I have heard about the benefits of Oxygen against cancer. That is why I do light exercises and eat raisins, dates and spinach often because it strengthens the haemoglobin which carries oxygen to cellular level.

I have personally benefited from doing the above to stay cancer free. (Click my name for more info about me). The theme of all the above is that they work for your benefit and not that of atypical cells.

"Atypical cells can revert to normal if the underlying cause is removed or resolved."
http://www.mayoclinic.com/health/atypical-cells/an01111

You may also want to read another post on this site.
Search “Terrie05” and then do a Find for “hydrogen”
Terrie05 on Thu, 04/01/2010 - 15:16. mentions about "food grade hydrogen peroxide".

If it is of any comfort to know, I involved a number of oncologists and other doctors from different hospitals to obtain all the information I needed to make decisions before during and after my treatment.

Take care
Felix

Dear S Moreno Terrie05 added

Dear S Moreno

Terrie05 added this to another thread on this site in response to my quoting that. Here is what it said
"I am not an expert on the food grade hydrogen peroxide so wanted to give you the link so you can read about it. http://www.naturaldiseasecure.us My husband was trying the food grade HP for a while until we decided on a 6 part regimen that is in the Bill Henderson Cancer Cure book. We do not know if it's working yet and plan to get scanned first week of June. If it is not working, we will check into another alternative method before going back to high dose chemo."

Hope that helps.
Felix

Felix- I like a lot of what

Felix-
I like a lot of what you're contributing here very much, but I would like to correct you one common misconception, and that is that sugar feeds cancer, and by consuming sugar a person is feeding their cancer. This is a widely held misconception.

There are plenty of reasons for all of us to reduce our sugar intake, including cancer patients, but those patients don't need to worry that if they eat a ding dong they're helping a tumor grow. Cells use glucose for energy, whether cancer cells or healthy cells, but increasing one's sugar intake isn't fueling the cancer. If this were true then you could cut sugar from your diet and starve your cancer. According to this line of thinking, you would by extension be starving healthy cells of sugar as well and your whole body would collapse.

Ross

Thanks Felix/Ross, Any

Thanks Felix/Ross,

Any information is helpful.

-Shel

Hi Ross Thank you for the

Hi Ross

Thank you for the kind words and for throwing proper light about the sugar.

I deliberately used the word “supposedly” so others interested would find out more. Perhaps I should have said “simple sugar” because that is what I meant.

When I was sick with DLBC Lymphoma Stage IV I held on to life by the skin of my teeth.
You would understand my saying that I tended to be safe rather than sorry and didn’t want to risk finding out that an alternative was disastrous.

The school of thought I followed was that it was better to limit the amount of “simple sugar” you eat (because your body also makes sugar from other foods you consume). Too much sugar would boost the creation of insulin to levels more than the body needs and the insulin in turn may encourage cancer cells to grow. Who knows! I certainly didn't. But my stance was to err on the side of caution. I completely cut simple sugar (such as what I would have used to sweeten tea, muesli and fruit drinks) and did not eat sweets, chocolates and cakes when I was sick.

Thank God I am well now and I do eat simple sugar in moderation (except perhaps during Christmas and birthdays!).

Trust that clarifies and thanks again.
Felix

I am posting for JohnnyP (his

I am posting for JohnnyP (his fiance) Cathie,
I have not posted since John was diangosed in June of 2009. He is coming up on his 1 yr anniversary in the next couple of weeks. The past year was to say the least horrible. John had started out with a sinus infection that would not go away. He could not sleep, became extremely tired, run-down, night sweats, he just could do a thing for approx. 2wks. Week 2, he was rushed to the ER, if he did not go to the ER that day he would have been dead. His blood level was a 3! His Dr. noticed all his lymph nodes were the size of golf balls ALL over his body. He was sent to the hospital where he had a biopsy done on one in his neck. He was in and out of the hospital after that for about a week. They could not figure out what was wrong with him. The ran so many tests, finally with a team of oncologist and a specialist that flew in just to see John determined it was Angio. T-Cell Lymphoma. He did at least 6 rounds of RCHOP. The Dr. recommended John go for a bone marrow transplant. He harvested his own cells and had a transplant in Nov. He has had 2 PET Scans & 2 CAT scans, since the transplant he remains CANCER FREE! Thank you to Dr. Castillo, Dr. Jacobsen and the magnificent nurses at Dana Farber and Brigham & Womens in Boston, MA.

This is outstanding, thank

This is outstanding, thank you Cathie, so much, for returning to this site and letting us know how he's doing!

Ross

Hi I was diagnosed with

Hi I was diagnosed with Angioimmunoblastic in Feb. I had 6 treatments of CHOP with 5 days of Prednisone after each treatment. My hair started falling out after 3 weeks-very disconcerting! I am in remission but my Dr. is recomending ICE(4 days in the hospital with heavy duty chemo) and then a Autologous transplant at either Hackensack or Robert Wood Johnson Hospital. I don't want to do that but it sounds like I'll have a better chance of surviving this horrid cancer. I never had night sweats but I did break out with rashes on different parts of my body; it went away when I started treatments. I also never had any sinus problems.

My husband was diagnosed with

My husband was diagnosed with this disease in March.He has had 4 Chop and his first ICE treatment this week. His doctors also recommend a rescue stem cell transplant. I have researched this treatment and I have found this is the way to go. After the CHOP my husband has gained back his strength and is feeling well. So it is hard for him to think that he needs further treatment, me too. But everything I have looked into says this is the right way to go.

Dear Alice. I have cried for

Dear Alice. I have cried for so many days not knowing about anyone else who has had this type of lymphoma and read so many negative words. No one had any idea about this type of cancer. My husband had a increased fatigue, rash, poor appetite, night sweats, and went to physicians and referred to a dermatologist only to find nothing. All the thousands of bloodwork came up low Vit D it was 12 (not a smoker or drinker) in good health. After that I became suspicious and finally the nodes started neck, underarm & groin. I ask the MD to please order a CAT scan and thereafter we were referred to an Oncologist & surgeon. We have since been to SLoan and very satisified with Dr. ALison Moscowitz and her findings after the bone marrow aspiration, PET, port insertion & echocardiogram we are ready to fight this and go forward. Mu husband is only 46. My husband will be starting Chop then ICE and a rescue stem cell at Sloan Kettering. I was moved to see your comment and it has given me a new perspective. Thank you and thank all of you for sharing so someone like me can learn about this most challenging cancer. Blessings to all..

Maureen L,

Dear Maureen, I am glad you

Dear Maureen, I am glad you were able to find this site. I was overwhelmed when my husband was diagnosed and read all the negative words too. So far so good. He is feeling well and it has been 6 months, he is back to his old self. Good luck to your husband and my prayers are with you.

Dear Alice, How is your

Dear Alice, How is your husband feeling? My husband as of June 10th, 2011 finished 4 rounds of CHOP (every 2 weeks). We are scheduled to see a stem cell speicalist at Sloan, and also scheduled for a CT scan. On June 24th, 2011 he will be an inpatient at SLoan and receive ICE, first of 2 rounds. How I pray the CT comes up clean and we can move on and trust me, count every blessing. I am crying less, because I am hopeful and pray daily. My husband did not get sick at all, some bone pain, but as he explained it, he was so uncomfortable for 1-1/2 years...it's no worse, so he is MY SUPERMAN...Thank you for sharing and listening...God bless all,
Maureen

Maureen L,

Dear Maureen, My husband is

Dear Maureen, My husband is feeling well. Has been having good checkups and in the begining of Sept will be one year since he had the stem cell transplant. My husband had the 2 ice treatments and did ok just tired. My prayers are with you.
Alice

Dear Alice, My husband has

Dear Alice,
My husband has seen the stem cell specialist at Sloan Kettering, and had his CT Scan which showed remarkable progress, thanking God and all who are involved in his care. My husband is remaining tough and doing well! Also had his first round of ICE at Sloan -3days in hospital. The care was remarkable. My husband felt weaked for about 2-4 days, this weekend he is doing better. He does have a rash, which is a side affect of the "C" in ICE chemo. Did your husband incur any of this? As soon as I see the rash I think of the beginning of all of this. I am using benedryl gel on him, and benedry po. Is there anything else topical without grave side effects that anyone has used ? Second round of ICE coming up.
Also ALice, I need to tell you , I do have a strong faith. But as I went through this and felt helpless after a year & half of such uncertainty over my husbands symptols. I cried for a few weeks, letting this get the best of me. Because as you know it is NOT just my husbands cancer. It also is the cancer of all those who love him as well. When I read your posting it gave me insight and strength. The postings on the computer regardless of the most degreed sites & authors were outdated and grim. Thank you again for giving me courage so that I remain strong for myself and most importantly for my best friend & husband! Thank you, thank you! I will keep you updated. Sincerely & most grateful! Maureen

Maureen L,

Hi Maureen, My husband did

Hi Maureen, My husband did not get a rash with his ICE treatments.I know a rash would scare me too because that is how my husband started too. But you have good news the cat scan shows he is making remarkable progress. Every treatment made my husband better. This past winter my husband developed a horrible cough which was a major symptom he had initially, the cough lasted awhile, he felt ok but I also was worried because that is how it started for us. You will always now be looking over your shoulder waiting for the shoe to drop. After this I have learned to focus on the good. As wives we love our husbands so we will always worry. I have a great friend at work who said this to me its ok to worry( she calls it going to that crazy place) but you can't stay there for long.You have to focus on the positive. Our lives are pretty much back to normal, because my husband feels great. A week or so before his checkup is stressful because for a little while he forgets he was sick.
Maureen, faith has helped me too, I read all the grim realities of this disease but so far my husband is living with it and doing well. Take care and keep me posted.
Sincerely, Alice

Hi Alice, Returned home and

Hi Alice,
Returned home and transfusion has been put on hold. There is some activity in abdomen and near trachea (where there had been prior to beginning of all chemo). There was a dramatic response at first. We are going to see a thoracic surgeon for consult? I have no idea what to think, ....just lost.

Maureen L,

Maureen, how is your husband

Maureen, how is your husband feeling? I know you must be so worried. Try to take one day at a time. Wait and see what the thoracic surgeon has to say and try not to think the worst. My husband always has something on his liver that they have been watching hasn't changed but they are watching it since the stem cell transplant. I wish I could say something to make you feel better but know my prayers are with you. The other thing is not to compare our husbands. They have the same disease but their treatment course will be individualized for them. I like to think its like comparing your kids, they are each different in their own special way and we know how to treat them. Hope this helps. Alice

Dear Alice, The Thoracic

Dear Alice,
The Thoracic surgeon today biopsied the area near the trachea (which he said is lymphoma, just do not know if it is a new lymphoma or just an area in which it was not as receptive to chemo as we hoped) We see the oncologist next week for the results and discuss what will be the plan. A bronchoscopy was done as well that came up clean(THANKING GOD)! I realize our husbands will respond differently. I do find support here though because you fully understand. I pray for your husband Alice that the area on the liver just stays a spot without ANY reoccurence. I want you to know talking about this with you does help me to take one day at a time, just seems difficult at times though I will admit. I want to thank you for your support. Maureen

Maureen L,

Maureen, thinking about you.

Maureen, thinking about you. We go for our checkup next week, had cat scan and start immunizations. Hope you have a plan in place.

Alice

I truly pray your visit and

I truly pray your visit and immunizations go well. This Tuesday second round of chemo, then PET, if Pet negative then 3rd round of EPOCH and stem cell transplant which his brother is perfect match! Hopeful, praying! This is the plan and hopinbg God guides us with strength & healing. Thank you so much for thinking of us!
Thank you so very much! Maureen

Maureen L,

My husband had a good check

My husband had a good check up Cat Scan was good. Blood work good and back to normal. Immunizations will be in Dec dr wanted to wait a little longer. Hope the pet is negative, my prayers are with you.

Alice

Thank you for letting me

Thank you for letting me kknow this terrific news. My husband just finished his secind round of EPOCH. PET is 9/19/11...Thank you for your prayers, you are in mine as well and I hope all the immunizatios are completed without any problems. Thank God the CT is negative for you. I am so very happy for you both!
Maureen

Maureen L,

Maureen, How are you and your

Maureen, How are you and your husband? Been thinking about you. Had a busy month sorry I didn't reply sooner.
Alice

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