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Peripheral T cell NOS Non Hodgkins lymphoma

michellelemon
Posts: 30
Joined: Dec 2009

Anyone out there with this? My father was diagnosed with this 5 months ago - stage 3 - no organs involved thus far - just finished 5th treatment chemo (CHOP) - handling it fairly well - regression in all of his nodes - 6th round will be in early January, 3 weeks later a CAT scan to see where we are - and he is expected to go through a stem cell (autologous) transplant soon after. Just seeing if anyone has experience with this... Thanks!

sparkling
Posts: 6
Joined: Feb 2010

WoW! I finally found someone who has the same diagnosis as my husband! How old is your Dad? I assume he is finished with CHOP and has had a scan, how did he do?

My husband was diagnosed in June09, 6 rounds of CHOP. The scans showed it the mass on the pancreas only shrunk less than 10%. He was already treated with the largest possible dose of CHOP, so no option there. He also had Thyroid cancer 3 months prior to this diagnosis. He doesn't qualify for any clinical trials since having 3 different cancers.

So, how is Dad doing now?

Janie

michellelemon
Posts: 30
Joined: Dec 2009

How is your husband?? I pray that he is hanging in there! I know the feeling - it is a rare one... My Dad is 73 and is currently undergoing high dose chemo prior to a stem cell transplant in a few days after achieving remission afer 6 rounds of CHOP- we are in the midst of it and much remains to be seen..
let me know what is going on.... one thing I was told is that ICE chemo can be used for this type if CHOP does not attain remission...let me know!

kathyh007
Posts: 4
Joined: Jun 2009

Hi Janie
I’ve been really busy for several months, and alternating with fatigue/pain. I saw your blog today and thought you’d like to hear some good news.

I have a combination of ALCL ALK- and PTCL NOS. The ALCL has CD30 antigens, so I was admitted into the SGN 35 clinical trial. IT WORKS!! I’m regaining my old strength and feeling better than I have in many months. When I started the treatment in December, I could barely get out of a wheel chair. Now I’m up and around much of the day. Still need a long nap in the afternoon and a lot of sleep at night. But I’m getting well!!!!

The treatment is so successful for many people, that Seattle Cancer Care Alliance opened their trial to PTCL NOS patients. You may want to check that out. Dr. Shustov heads the SGN 35 clinical trial. I was so sick and I wasn’t sure I would make it. But PTL! Here I am alive and getting better.

Many blessings, Kathy007

Jenna K
Posts: 1
Joined: May 2010

HI
My Aunt was just recently dx'ed with PTCL NOS. From what I've read, we're completely scared out of our mind. We live in Los Angeles, CA. Where can we go to get the best treatment in Southern Calif? Any suggestions? What type or kinds of clinical trials are running in S,Calif? What is her outcome? Any comments or suggestions welcomed. Thanks and sorry for sounding so scared.
Jenna K

gunadi1965
Posts: 1
Joined: Feb 2013

I noticed you are in LA. My wife has PTCL and started her chemo two weeks ago. We realize there are symptoms that will only occur to her. What we are looking for is a 24 Hr info line so we can ask when to go to the ER or how to handle situations.

She fainted in my arms today. She was sitting on the toilet and asked me to help her. She went limp in my arms and completely passed out. We need help to start understanding the actual things that happen.

Thanks for any help you can offer.

H Salinas

 

 

 

 

natalie14's picture
natalie14
Posts: 36
Joined: Mar 2010

I am a 28-year old mother and was just told I had relapsed with Peripheral Cutaneous TCell Lymphoma. Last year I completed my eighth round of CHOP chemo and am now just told I have to go through an autologous stem cell transplant. I AM TERRIFIED!!! They told me it is a 50% chance of cure. Natalie

michellelemon
Posts: 30
Joined: Dec 2009

I pray all is well with you! My father is in the midst of a stem cell transplant - he just completed day 3 of his 6 day high dose chemo regimin and his transplant is Monday - he is Ok right now although it will get a little messy next week when it hits him, we know. But I do not think it is to be terrified about... one day at a time and all will work out... I am so late in responding to these posts, you may be ahead of us... I hope all is well and keep me posted! God bless!

natalie14's picture
natalie14
Posts: 36
Joined: Mar 2010

How is your father doing? I hope he is recovering from his stem cell transplant! Was it an allo or auto transplant? Blessings to you and your father!!
Natalie

michellelemon
Posts: 30
Joined: Dec 2009

My Dad - diagnosed with Non-Hodgkins PTCL NOS is still cancer free and hanging in after six rounds of chemo and an autologous stem cell transplant. It has not been a walk in the park, to be fair - but he is quite happy to be cancer free and moving ahead with his life...God bless!

sparkling
Posts: 6
Joined: Feb 2010

How is everyone doing? My husband's status hasn't changed, the mass is about the same size. The pain he suffers through is horrible. Feet and hands, under the armpits. But nothing new has popped up other than a benign mass on the epiglotic and another one where the parotid glad once was.

miss maggie
Posts: 929
Joined: Mar 2010

Hello,

I am so sorry for your husband's discomfort. If possible, can you post your
husband's history.

Prayers your way. Love Maggie

po18guy
Posts: 237
Joined: Nov 2011

Michelle,

Yes, there is hope for those afflicted with this rare cancer. Your dad and I are examples of that. I pray that all is well and that he is enjoying even the 'new normal'.

Jim

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

HI
I was so excited to see you post but then noticed the date. I know you are well and living your life but I have thought of you so much in the last year. Please write and let us know how you are. If anyone else corresponds with her privately please tell me how she is Joanie

sharlando
Posts: 1
Joined: Sep 2011

I am 48 years of age and in July 2011 I was diagnosed with stage III Non-Hodgkins Peripheral T-cell lymphoma unspecified. I had shortness of breath and a pain in my chest and right side. I began CHOEP chemo Sept 7, 2011 for six rounds. I received the autologous stem cell transplant Jan 2012. As of Sept 11, 2012, I received good reports. I will go for a PET Scan next month and pray for good results. God has brought me along way. I know the cancer could again raise its ugly head, but living my life for God makes me feel great. I also have lichen planus, oral lichen planus, and lichen sclerosis, which are not easy to deal with. I have always believed that things could always be worse. I do try to have an excellent attitude and I don't look at the prognosis anymore because it could be very depressing. I am very greatful to find others that are dealing with NHPTCL and are surviving. It gives me hope. My biological and church family have helped me greatly. I never knew how much people loved me until going through this ordeal. I just want everyone to know that I always include you in my prayers. There is very little information on this type of cancer and just knowing and communicating with others is a bright spot in my day. Love to all.

lf2011
Posts: 3
Joined: Jun 2011

My husband was diagnosed in May of 2010 stage 4 and I have been looking for survivors of this terrible disease. He had the CHOP made it to 5 treatments -counts were really low - did a scan and there was some disease left. They started GND which worked really well for him he was doing great. Scans were clear etc. Set up for Stem cell transplant. Went for the scan and bone marrow testing and the cancer was back in the skeletal area and spleen which was where it started. His liver was not functioning properly, therefore, they could not treat the cancer and he died 8 days later. It seems to me it is very hard to find information about this disease. I was wondering who survives it and how they did it. I guess I would like to hear some success stories. How is your father doing? Sorry I know this posting was quite a while ago, but I just found it. Thanks.

po18guy
Posts: 237
Joined: Nov 2011

I was diagnosed with PTCL-NOS in July, 2008. Stage IV, with 54 malignant nodes and cancer in my marrow. The short story is that Divine intervention saved my life. After immediate post-chemo relapse, I have now been in remission for over 2 1/2 years. The purpose of my life is to offer support and encouragement others traveling the same path.

Jim

Zoi29
Posts: 11
Joined: Aug 2012

po18guy I am very happy to hear that you are doing well. What exactly is divine intervention? Is it being religious and believing in god only? Did you do anything else but the Divine intervention?

po18guy
Posts: 237
Joined: Nov 2011

I will keep it very general: Divine intervention is action taken by someone of great power who is outside of this earth. Far too many locked doors were opened for me, all in sequence and at the exact time. My hematologist is not a religious man, but he calls my case "a miracle to be watched." There is no earthly or scientific explanation for the things that have occurred. I know that it is not trendy at all to have an old-fashioned faith these days, but that is exactly what I have been given. It is the only thing on earth that could make this journey not only survivable but, in the end, even desirable. If I could go back four years and have my choice, I would accept the cancer gain. It has become that much of a blessing. Heck, I'll probably develop it a third time, but that's OK. I am living more and more for the next world and less and less for this one. No death wish, but after facing it twice, death no longer frightens me.

michellelemon
Posts: 30
Joined: Dec 2009

My father, at the age of 76 now (hard to believe it has been over 3 years) continues to be in total remission and is doing well! As stated earlier, he started with the CHOP regimin and then underwent an autologous stem cell transplant for this. We had two scares with him having pulmonary embolisms and 8 days in ICU each time in the midst, but he survived each time - and is on the blood thinner coumadin for life now - a good thing! We also had a recent concern,as there was a possibly "hot spot" found on his lung in a follow-up Pet scan. But, thankfully, a recent second scan showed it to be non-cancerous! He is feeling well and living a full, healthy life! I am so happy to be able to offer this hopeful message - as I know I was not offered many upon his initial diagnosis. Prayers for all going through this -and know there is hope! One aside- upon learning recently that there was no longer a concern about his lung, my Dad, in his usual, mellow way, said to my Mom "I guess I did OK:-)", to which my Mom replied "Yes, you - and all of the prayers everyone has been saying for you!" God bless!

po18guy
Posts: 237
Joined: Nov 2011

Given PTCL's reluctance to respond to the old-line therapy of CHOP, your father's response is excellent. What a blessing! PTCL-NOS (or US) is actually a quite wide variety of unknown sub-types of PTCL. Thus, some respond to CHOP while others simply do not. There is no known regimen to which any given variety will respond, so doctor guessed correctly. And, the Auto SCT during first remission gives him a pretty good chance of remaining disease-free for the remainder of his life. Since my variety was highly resistant to chemo therapy, and either was not eliminated by chemo, or relapsed immediately, I do not have the option of an Auto SCT. Neither do I have the option of an allogeneic SCT, as there is no known donor. However, a new class of drugs has emerged, with great promise: the "inhibitors." I have received HDAC inhibitor Romidepsin/Istodax (histone deacetylase inhibitor) now for over 3 1/2 years, and have been in full response almost as long. There are other HDAC inhibitors available, and other "inhibitor" drugs in trial. A new variety is the Aurora Kinase Inhibitor, which along with the HDAC inhibitors, either forces or restores normal cell division. These drugs are far less toxic than conventional chemotherapy and can be tolerated for longer periods of time. Something to keep stored in the back of one's mind just in case. However, we hope and pray that this never happens.

michellelemon
Posts: 30
Joined: Dec 2009

I am glad to hear about these HDAC inhibitors for you! I feel with time, more options become available which is great! Prayers!:-)

rabdoog
Posts: 3
Joined: Jun 2013

Hi ..my name is Cathy.  I was diagnosed with PTCL NOS in July of '12 and did 6 rds of CHOP...2 mos. late it was back.  I am being treated at Cancer Center of America in Zion, IL.  they tried ICE on me in plans of a SCT, but I couldn't rebound from the ICE, so I only got 2 treatments.  In March I started on the Romidepsin.  I couldn't have it on the normal schedule as my platelets always run in the 20Ks, so I have it about ev. 2 - 3 wks.  My question is...

how often do you have your treatments?? How often do you get a petscan or a ct?  Another question is .... how do I find responses to my replies?  I repled to someone else and have no idea of where to find his reply.

  Thank you...and God's best.I also am doing a protocal out of a book called Cancer Free, by Bill Henderson.  It is a lot of immune boosters, vitamins and a mostly vegan diet, but also no sugar, dairy or gluten.

  Thank you...and God's best.

po18guy
Posts: 237
Joined: Nov 2011

Hey, Cathy! Not surprising that it relapsed immediately. CHOP is a real hit or miss regimen - but there is no recommendation for PTCL. I had dose intensive CHOP plus Etoposide (CHOEP) for four cycles, followed immediately by four cycles of GND (Gemzer, Navelbine and Pegylated Liposomal Doxorubicin). Mine relapsed immediately, as well. That is when the clinical trial of Romidepsin (Istodax) opened up. I entered the trial and went into complete response. I have remained there now for over four years. I was receiving infusion for 3 weeks in a row, then a week off for my blood to recover. After a bit over a year in remission, I dropped to treatment every two weeks. Another year after that, and I went to single monthly treatments, and scans are still clear. Where we go from here is anyone's guess - we simply don't know, as we are experimenting.

Be careful with all alternatives, and please run them by doctor! Immune boosters are fine, but skipping sugar has zero value. Why? Our blood requires sugar for cellular and organ function. Our blood sugar level is very closely regulated or we become diabetic, or hypoglycemic. The same with alkaline water and other supposed cures. If we were in a Petrie dish, all of this might work, but our bodies function in a very narrow and precisely regulated range. If we starve the cancer, we also starve our body - there is simply no way around this, since the cancer is a part of our bodies. Now, targeted therapies like Romidepsin single out the tumor cells for destruction and basically leave the healthy tissues alone.

Here is a T-Cell Lymphoma presentation that was put on by my doctor, a T-Cell Lymphoma specialist at Fred Hutchinson: http://www.presentme.com/audio2012/20121111LRFShustov/

Yes, CSN is not asy to find replies on. Best to begin your own thread and check it daily for posts. Thank you, as prayer has sustained me.

Jim 

anliperez915's picture
anliperez915
Posts: 748
Joined: Sep 2011

Hi Jim,

Just had to say something about the alkaline water, a man I don't know came up to me the other day and started telling me about his miracle cures such as the water and wanted for me to drink this alkalined water that's suppose to kill cancer cells, I didn't know what to say but trust me I didn't believe him. I have such luck with attracting those types of people, always trying to sell me the miracle cure for everything! Damn I should already be a millionaire with all those remedies hahaha! Thanks for the information, it's always very informative! Take care

Sincerely,

Liz

michellelemon
Posts: 30
Joined: Dec 2009

I am so sorry to hear of his passing. God rest his soul and prayers for you. All I can offer, scientifically, is that although my father's was found in every lymph node, it was not found elsewhere? And he responded to CHOP, somehow, after three treatments? I know more information needs to be made known about this form - we were operating very much in the dark. Take care and I hope you are well!

Podie1956
Posts: 6
Joined: Aug 2012

I was thrilled to read your post as my 66 year old husband is about to have an auto SCT after five rounds of Hyper CVAD chemo for Anaplastic Large Cell Lymphoma. They are rushing to get him the SCT at his first remission so I pray this will do the trick. Reading about your father made me feel really good!

michellelemon
Posts: 30
Joined: Dec 2009

So glad to be able to offer that encouragement! Prayers for you and your husband!:-)

michellelemon
Posts: 30
Joined: Dec 2009

My Dad, at 76 now, is still doing well - cancer free and just living his life! There is hope! We no longer live in the cancer world - no more regular scans, etc. - not the focus any longer -  but it was ours for quite some time and we do not take it for granted. He prefers not to dwell on it and just look forward. I get that but also want to continue to offer encouragement where we once had little!:-) I think he is just glad to have it all behind him currently and wants to look forward! This year, he traveled to his granddaughter's wedding and also met his two great-grandchildren from his oldest granddaughter for the first time! And has had many lovely experiences since;-) Yes, my parents are gettting older - Mom was a "cougar" - 7 years older than Dad, at 83 now - but still beautiful and amazingly vibrant and active - she has been Dad's primary caregiver all of this time -and they celebrated their 54th anniversary this year! Mom is also a cancer survivor - 18 years since in remission from stage 2 colon cancer. Hope is alive! Pryaers!

epicc's picture
epicc
Posts: 136
Joined: Nov 2012

Hi Michelle,

I have enjoyed reading your journey.  My mom at 82 was recently diagnosed wih Stage IV Intravascular Lymphoma (in the blood).  It has been a very tough 3 months for my parents and my sister and I.  She was just in ICU last month with a blood clot just like your dad.  I was told very common in older patients.  She had started with R-CVP instead of R-CHOP.  They were worried that R-CHOP would be too strong.  R-CVP was not working very well and they changed her to bendamustine rituxan which as worked very well and she looks great this month.  Before she got sick she was very active and had never been sick before.  My mom is 82 and My dad is 76.  My mom also a "Cougar".  LOL  Just wanted to share.  So happy your dad is doing well.  It has given me some hope that my mom could possibly reach some kind of remission.  Prayers to you and your family.

 

Emily

 

michellelemon
Posts: 30
Joined: Dec 2009

I am so sorry to hear that your Mom is going through this, but glad to hear that she is responding well to her latest treatment! Yes, the blood clots, I have learned, are fairly common - and I wonder why, upon treatment designation, blood viscosity is not checked to prevent them? But I am so glad she made it through those also. It all bodes well. I am glad to be able to offer the encouragement. And how cute that your Mom is a "cougar" too! Love it! 

Please keep us posted! Prayers to you and your family as well!

 

Michelle

michellelemon
Posts: 30
Joined: Dec 2009

 

 

michellelemon
Posts: 30
Joined: Dec 2009

I keep all in my prayers and hope for the best for all. The latest on my Dad is that he had a routine follow up visit to the oncologist the other day and all went well! He will be 77 next month! And we look forward to celebrating this birthday with him! Our concern now is his knees; he had an injury to them years ago and has had issues over the years; the arthritis it is causing now, though, is limiting his mobility and we are looking into knee replacement surgery. No sense going through all he has been through, only to be limited by something so non-life threatening, considering the vibrancy and wellness otherwise he has re-attained. When I look back on all he has been through and more than survived, I agree - let's do this!. Surgery will require cutting back on the coumadin for a brief period. But all will be kept in mind by the doctors. I keep recalling him, after being in remission after initial chemo, but him knowing he had to do more to save his life, walking into that cancer clinic, well dressed in his Tommy Bahama shirt and shoes, laying on that hospital bed, saying "do what you have to do". And it was not pretty after that. But he endured it all to great result! So I think he deserves new knees to keep up with daily walking routine with 83 year old Mom! :-)

michellelemon
Posts: 30
Joined: Dec 2009

I keep all in my prayers and hope for the best for all. The latest on my Dad is that he had a routine follow up visit to the oncologist the other day and all went well! He will be 77 next month! And we look forward to celebrating this birthday with him! Our concern now is his knees; he had an injury to them years ago and has had issues over the years; the arthritis it is causing now, though, is limiting his mobility and we are looking into knee replacement surgery. No sense going through all he has been through, only to be limited by something so non-life threatening, considering the vibrancy and wellness otherwise he has re-attained. When I look back on all he has been through and more than survived, I agree - let's do this!. Surgery will require cutting back on the coumadin for a brief period. But all will be kept in mind by the doctors. I keep recalling him, after being in remission after initial chemo, but him knowing he had to do more to save his life, walking into that cancer clinic, well dressed in his Tommy Bahama shirt and shoes, laying on that hospital bed, saying "do what you have to do". And it was not pretty after that. But he endured it all to great result! So I think he deserves new knees to keep up with daily walking routine with 83 year old Mom! :-)

Mallory's mom
Posts: 7
Joined: Mar 2013

Looking for other with nonhodgkins T cell lymphoma NOS. My 28 year old daughter was diagnosed one year ago after suffering rash, fever and night sweats. She has completed six rounds of chemo and auto stem cell. Had severe headaches throughout treatment. Is now 2months post transplant. Continues to feel weak, has less intense headaches and some night sweats. Her doctor gives us only basic information and offers no emotional support. We are, of course, scared to death of relapse. How long before she should feel better after transplant? 

michellelemon
Posts: 30
Joined: Dec 2009

From my experience with my Dad, it frankly takes a while. The transplant lays you pretty low and it takes some time to get back to oneself. Do not be discouraged by this. It took several months, honestly, before my Dad felt more himself. It is just the nature of it. It is not meant to be a "quick fix", but an intense treatment with some after effects to secure a healthy future. But with her youth and having taken these steps so early on, it will probably not be much longer until she is feeling better! Please keep us posted!

illead's picture
illead
Posts: 505
Joined: Aug 2012

So glad to hear your mom is doing so well.  We've been wondering about her.  Benda/Rit really seems to be a winner.  Hope it is as easy on her as it was on Bill.  Hope you and the rest of your family are able to relax a little and that your mom is starting to feel human again.  Our thoughts Bill and Becky

epicc's picture
epicc
Posts: 136
Joined: Nov 2012

Hi Becky,

 

I was going to email you in a few days.  I'm still keeping my fingers crossed!!!  She came home just last week from the hospital. She did not want to go to Rehab again, so we made it happen.  She has a 24 hour aid.  Very pricey but worth it.  She looks GREAT!!  She is eating better and my dad gets her up several times a day to walk a little.  She went to her doctor's appointment today and everything looked great.  So my sister made sure that her chemo date is set for Thursday Feburary 7th and 8th.  She gets Rituxan and 2 days of Benda.  I have to tell you, the nurse once again tries to push things out with no reason.  My sister sat there and said, I'm not leaving unless her chemo is scheduled on the exact date she needs it.  Not sure why they do this.  Very scarey.  But anyway, it's scheduled.  Now we pray nothing happens until next week.  My stomach of course is in knots.  Please pray for us.  Hope all is well with you and Bill. 

 

Love, Emily

illead's picture
illead
Posts: 505
Joined: Aug 2012

I was hoping that was the news.  That is so much better than what your mother went through before.  You guys stick to your guns with the nurses.  We have such a wonderful cancer center here, they treat you like royalty, and we actually look forward to going. Everyone is on a first name basis including reception.  Wish it could be that way for all, I think it really makes a difference.  Your mom is older, but I am confident that she will make steady improvement and very possibly back to her old self again.  I sure hope so.  Keep on keeping on, our thoughts and prayers continue with you, Becky

po18guy
Posts: 237
Joined: Nov 2011

Michelle, some of the chemotherapy can also cause or aggrevate arthritis, and combined with his injury, I guess a new knee(s) are not unreasonable to expect. But, he's clearly a tough one, and has great, loving family support, so he might as well go for it. Thank you for checking in - especially when it is reassuring news. 

michellelemon
Posts: 30
Joined: Dec 2009

Sorry - I am not sure why that last post posted twice? But yes, my Dad continues to be cancer free  - good news in and of itself! And yes, it is clear that the high dose chemo did him no favors with his knee joint issues, but we have to realize, little price paid comparatively.  He desires to live in the post-cancer world -of which I do not blame him! But I am aware of what occurred and I want to continue to be a voice of hope!   Frankly, he actually remembers little of his sojourn with the stem cell transplant. It just knocked him out that much - they bring you to almost zero of all counts of anything life sustaining but then bring you back up with the introduction of  the healthy cells. Fascinating stuff! But, as I began this all feeling hopeless, helpless and confused, I am so happy to offer hope for others!

po18guy
Posts: 237
Joined: Nov 2011

Great news! I received a call from the clinical trials nurse Wednesday. She advised me that my scans of last Monday (March 18th) showed no evidence of disease. That makes 50 cycles of Romidepsin and four years in response. Michelle, I pray that your dad never faces relapse, but if he does, Istodax (Romidepsin) is a very viable option. 

michellelemon
Posts: 30
Joined: Dec 2009

I am so glad to hear that for you!! Great news, indeed!! And great advice. My dad continues to be in remission as well - three and a half years now ( he went into remission 3 months after initial chemo and has remained there, through it all.) Hard to believe, but we celebrate his 77th birthtday in two weeks! Thank you for prayers and will keep you in mine:-)

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1048
Joined: May 2012

Michelle,

I used drugs different from your dad's, but many chemos do aggrevate arthritis, at least temporarily. Rituxan and WBC boosters (neulasta and the others) are especiually notorious for this.  I did chemo with severe arthritis, bone ossification from 18 fractures, and a broken back from years earlier, but got through it. I was younger (53) at the time, but it can be done.  At first the neulasta almost put me in the hospital, but the doc cut the subsequent doses to a fraction, and it still worked fine, and with only minimal pain.  Bless you and your dad,

max

michellelemon
Posts: 30
Joined: Dec 2009

Thank you for your post and I am glad you got through it! Yes, the Neulasta was a staple, as I recall, so that makes sense. Thank you for pointing that out.  He did not have the initial reaction to it, about which we were warned, but most probably a cumulative effect. God bless you too, Max!

Mallory's mom
Posts: 7
Joined: Mar 2013

Glad to hear your dad is doing well. Prayers for everyone fighting this battle. My daughter is gaining some of her strength back. She continues to have frequent headaches which vary from mild to quite severe. Doctors wonder if this is hormone related and started her on hormone replacement therapy about two weeks ago. So far, no real improvment. We hope this will get better with continued treatment. Did anyone else suffer from debilitating headaches during their illness or treatment?

girliefighter's picture
girliefighter
Posts: 207
Joined: Mar 2013

Mallory's Mom,

I am currently suffering from these headaches that you speak of.... I called my oncologist and she suggested that I go to my primary care provider snd get imitrex, that is just what i did yesterday. I was prescribed 100mg of imitrex, it is a migraine drug. It stopped my headache yesterday and to be honest there is only one other thing that has helped stop it one other time. My headaches will last for days and cause vomitting, motion sickness, I couldn't even look at anything with a pattern on it without feeling nausea.

Praying for her

XXXOOO

Carie

michellelemon
Posts: 30
Joined: Dec 2009

I am sorry to hear about your headaches, poor thing! I hope that the imitrex helps! An aside thought, maybe be checked out for any inner ear problems, as well. I have found that people with inner ear disturbances are more prone to motion sickness, etc. and it is easily treatable. Sounds weird, but the crytals in yout inner ear can get out of place and it causes a loss of equilibrium which makes one more suscptible to motion sickness, etc., which I am sure is only compunded by the throwing off of so much which occurs with chemo.  Keep us posted and will keep you in prayers!

Mallory's mom
Posts: 7
Joined: Mar 2013

Girlie fighter,

How are you feeling? I'm sure you never planned to be in this situation and I know how overwhelming it can be. My daughter's headaches continue, but seem less frequent. They did give her Imitrex once early on in her treatment. Did not work for her. Overall, she is feeling better. She even went back to work part time as an ICU nurse. It has been a tough road and I pray for strength and comfort for you during treatment. It is a great comfort to have the support of others who really know what you are going through. Please keep us updated.

Love, 

   Mallory's mom

girliefighter's picture
girliefighter
Posts: 207
Joined: Mar 2013

Mallory's Mom,

Just checking in to see how things are progressing. I am praying this finds you all doing well.

XXXOOO

Carie

Mallory's mom
Posts: 7
Joined: Mar 2013

Mallory continues to get a little better everyday. Still has trouble with headaches especially if she  is sick in any other way. She had a bad case of the stomach flu and ended up in the ER for fluids and also a shot of Demerol to control her headache. How are you doing? Does the Imitrex seem to be working? Where are you at with your other treatment? It is good to hear from you.

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