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My wife

EB303
Posts: 22
Joined: Sep 2017

Hi Everyone,

We just received the news that my wife may have HL. This was a result of a biopsy done on her left groin lymph node. (Sorry I'm not up on the technical terms yet). The results were that they "suspect" HL. Oddly, the initial dx was that is was NHL, which was stated within a hour or two after the biopsy, but after it went to the lab, the lab stated HL.  Both used the term suspicion, though. So there's slim hope...

This was an accidental find. She had some pain in her calf and had an ultrasound to make sure it wasn't a vein. They then searched her whole leg and noticed the lump. She could then feel it for sure but never even noticed prior. Her only symptom was that on a blood test a few months ago, they notice a high white blood cell number. She followed up about 2 months later and the levels went down. No sweats. No abnormal fatigue (we have a 5 & 3 year old, so we're always tired anyway!). No weight loss.

Her CT scan will be next week. Trying to prepare for the worst. Since biopsy I've been all over the web and found this forum. A lot of great love and support here!!

I do have some questions that I wonder if you wouldn't mind opining on...

I guess to start, is it odd that they intially thought it was NHL, and now they say it's HL. The CT scan & additional blood work should confirm, but considering she lacked most symptoms, is it likely this is in the early stages? Everyone is truly different, I suppose.

 

Last, we live just outside of NYC (in fact, all of our doctors are in the city), so I know we have some great hospitals and centers at our disposal. But it's hard to find a real list of the top experts / doctors in the field. Does anyone know of any resources I could use? our GP has recommended a hematologist / oncologist but has already said that we can explore others if we like. This doc is out of Mt Siani; but when most people in NYC here the Big C, they immediately think of going to MSK. Any suggestions would be greatly appreciated.  

 

Thank you!

EB

 

Evarista
Posts: 254
Joined: May 2017

Hi EB.  So sorry to hear about what your wife and you are currently going through.  I do not know how "odd" it may or may not be to have the diagnosis shift from NHL to HL, but I do know that some of the tests on the biopsy materials take time. Within "an hour or two" of the biopsy, they would have had preliminary microscopic results ("frozen section") and possibly some flow cytometry results, but could not have had the more complex microscopic and molecular testing.  Those can take a week or so, depending on the lab & the tests that they are running and can certainly refine the result.

About choice of doctor's, one of our experts here (Max or Po?) will hopefully be in with suggestion. Best of luck to you both.

EB303
Posts: 22
Joined: Sep 2017

Thank you, Evarista!

po18guy
Posts: 989
Joined: Nov 2011

In NYC, I would go nowhere else. As to lymphoma, pathology is absolutely crucial. By any and all means, have the biopsy sample reviewed by the pathology lab at MSKCC. It is diabolically difficult to distinguish between some forms of lymphoma. Hodgkin's has some distinct similarities to Anaplastic Large Cell Lymphoma (ALCL), a rare and aggressive T-Cell Lymphoma. I personally know of cases where each has been mistaken for the other and a partially wrong treatment was given. I also know of three persons treated for B-Cell Lymphoma when they actually had T-Cell - we'd best not discuss them at this point.

Just be certain of the variety it is, and the proper treatment can be received.

EB303
Posts: 22
Joined: Sep 2017

Thank you, Po. I've read so many of your comments through the threads. Very helpful. I've always felt that MSKCC was simply the only place to go.

If I may ask one additional question...My wife will be going for her CT/PET scan on Wednesday. It is an annex of Lennox Hill Radiology. Does it matter who does the scan? As long as the results get's to the "right" doctor, it doesn't need to be conducted by MSKCC...is that right? Or should we consider the change, now? It was LHR who did the biopsy.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3258
Joined: May 2012

EB,

I "ditto" all Po wrote.

It is fundamental to get the diagnosis correct before beginning any treatment.  I hope she had an excise biopsy (cutting the node out), verses aspirational (drawing sample fluid out via a needle). Aspirational samples are much inferior to excise samples.  If it was aspiratinal, she may need a second biopsy pull, if the confusion cannot be absolutely resolved by all of the pathologists involved.

I do not think who does a scan is usually relevant. Scans are easily handed off to others via e-mail for second and third opinions.  If someone knows why the location of scanning does matter, I would like to learn about it, but have never heard such mentioned here n the past.  With MRIs, sometimes one facility with have a "stronger magnet" (T3 vs T2), for better imaging, but CT/PET is more the norm with Lymphoma. PET contrasting chemicals are always being updated, but again, any quality cancer clinic should have the latest-and-greatest, certainly at least for staging purposes. Usually, but not always, what surgeon pulled a biopsy sample won't matter either, and the slides are shipped to others for second opinions.  But even in this, the issue I mention above with aspirational vs excise still holds.

By itself, an NHL being reasasessed as HL is not surprising at all. But it probably does suggest that the diagnosis is not simple or obvious.

It is irresponsible to guess at staging prior to CT: Unfair to you and her both.  Superfically and impressionistically, her case sounds "minor."  But this counts for nothing.  Mostly-normal bloodwork is not of much value with Lymphoma, but of course normal is better than profoundly abnormal.  I had near-normal CBC at diagnosis, but was advanced whole-body involvement HL. (I was not Stage IV, since I had no bone marrow involvement, but the "spreading" was everywhere.)  But know that early staging of Lymphopma is less important than most organ cancers. That is, Stage IV is usually not a lot harder to cure or control than Stage II.  There are rare strains that are exceptions to this generality.

Avoid the Internet, except for academic and leading cancer center sites.  This is basic.  Most internet info is junk, and harmful.  Stick with SKCC, MD Anderson, Johns Hopkins Medical Center, The Cleveland Clinic, Stanford, Duke -- sites like that. They have more information than any one man could read anyway.   Or professional oncology journals, although these tend to be highly complex.  No miracle cures or magic elixiors, no magic diets or supplements.  "Weed Cures" are epidemic in the prostate cancer world, but none have any form of FDA approval.  Beware.

max

po18guy
Posts: 989
Joined: Nov 2011

Thank you for your very kind words. CT machines differ in their state of image refinement. They scan "slices" of the body - think of a spiral cut ham if you will. The thinner each slice is, the more detail is revealed to the radiologist. Some are 64 slice and some are 128 slice, with older units perhaps taking fewer slices. CTs, as you may know, reveal masses. They cannot determine if a mass is malignant or benign. PET scans reveal metabolic activity. Since cancer cells divide rapidly, they use more of our body's energy source: blood sugar. So, areas of hypermetabolic activity (sugar consumption) will be revealed - yet it is up to the radiologist to determine the significance of the various "hot spots" on the scan. The brain and liver always light up, as they are very active organs. The liver, in particular, is used as a baseline color (usually a maroon) with which other shades of red, orange or even white may be compared. PETs also cannot diganose a cancer. They can reveal it, but they also reveal areas of healing or inflammation.

Thus, as Max said, an actual lymph node must come out in its entirety. As to lymph nodes, a needle aspiration of tissue might miss the lymphoma cells within the node - a false negative, which is a bad thing. The pathologist must examine the entire node to see if its internal structure ("architecture")  is present. Think of peeling an orange: you have the skin, stem, segments and seeds inside. Suppose you peel an orange and there is nothing inside except clay. In a lymph node, the tumor cells are the clay. If the node's internal architecture is gone, lymphoma or metastatic solid tumor cancer, is about the only mechanism which can cause that. As well, the pathologist then has a maximum amount of tumor cells to examine and submit to various methods of testing.

So, as to pathologist and radiologist, you want not only techncians, but artists, as it is their judgment which determines the course of action.

EB303
Posts: 22
Joined: Sep 2017

Hi Po, Just saw this after replying to max. Since our GP made a point to say that they got a piece of tissue from the biopsy, my guess is that is a strong confirmation that it's cancerous. He then said it is suspicious for HL (again, the "spot" call by the radiologist was NHL, then they sent to a lab. It was later changed to suspicion of HL).  Time will soon tell. As you said, a false negative could be a disaster. At least now we leave no stone unturned.

I'll ask the radiologist about the slices. Our GP said it would be both a PET & CT. I think most newer machines now do both, so hopefully with newer, also means more slicing / better tech.  

EB303
Posts: 22
Joined: Sep 2017

Thank you, Max. I did not hear anything as to the location of the scanning, but I wanted to be sure.

The biopsy was aspirational. I know the excise is better but more invasive. I'm sure after the CT/PET they will want a better look. Our GP did say, as in went out of his way to say, that they were able to get some tissue. Maybe that's him just detailing the obvious.

Hard to avoid the google results, but I hear you. (It's how I found CSN!) I try to keep my own conclusions rational based on what I read. This will be a long road, regardless. I've done well in life to-date by doing my due-diligence on what professionals to trust, and once I put together the right team, I trusted. And so far, it's worked.

Scan is tomorrow. Fingers crossed. Thank you all again for the kind & helpful words.

EB303
Posts: 22
Joined: Sep 2017

An update on my wife.  Met with the Hema/Onc on Friday. The CT/PET (64 slices) confirmed the thw discovered growth to be 3.5cm. They also found another, deeper down in the same area, that was 1.5cm, and detected a possible third (smaller) near but not on her ovary. As mentioned by Max, a larger excise biopsy is next up, but doctor said that the results from the first biopsy are pretty clear this is Hodgkins.  She started to discuss likely treatments, barring no surprises with the biopsy.

Staging-wise, it's somewhere between stage 1 & 2. She said the treatment for this would be ABVD and then radiation after. She said the chemo would likely be one day, every 14-15 days for 3-4 months. I mentioned both the use of Rituxan and "why not CHOP"...she said that ABVD is what's typically used for HL, noting that it side effects are less harsh and that Rituxan doesn't have much affect on this type of lymphoma.  Additional concern, which she brought up - ABVD is known to be more toxic on the lungs. My wife, 46 years old, smoked for over 20 years. She completely quit 7 years ago, however she does have asthma. So they will pay close attention to her lung tests before finalizing treatment (they also check heart too).

We are looking into a second opinion as I type - specifically for someone at MSK. Mt Siani is a phenominal hospital and the hema/onc is very smart, very thorough, and great bedside manner. But we want to make sure we attack this agressively, leaving no stone unturned, and all options at our disposal.

Wondering if anyone's experience with HL had weighed CHOP vs AVBD and if Rituxan was used. Also, is a stem cell transplant something that is ordinarily done as part intial treatment, or would/should doctors wait to see if chemo+rad knocks it out. I feel like MSK would be more prone to the agressive approach.

Staying positive, remaining faithful to the big guy in the sky, and gaining as much knowlegde as possible.

-EB

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3258
Joined: May 2012

I'm glad you guys are making progress, EB.

I will respond to much of what you mentioned in your Sept 17 post, since I don't have time to reread the thread. If I am redundant, please understand.

ABVD is much, much more common for all strains of HL than CHOP, although a few good cancer centers use both, or sometimes prefer CHOP (Stanford, I believe, is one such CC).  But nationwide, ABVD is much more common.  I suspect that this is true at MSKCC.  Rituxan is almost never used with ABVD. The only time it is is when the HL strain is NLPHL.  NLPHL is very rare and atypical as an HL.   Rituxan only kills the CD-20 cell, and 95% of HLs do not express CD-20, so Rituxan against HL is seldom heard of.  I did have NLPHL and did receive Rituxan as R-ABVD.

"ABVD" as a whole is not more toxic to the lungs than CHOP.  It specifically is the Bleomycin in ABVD that can cause lung problems.   Lung toxicity occurs at around 10% of all users, so 90% are not ordinaily stricken.  This toxicity usually passes after treatments end when it does occur. It is more prone to occuring in older patients, and patients with pre-existing lung disease.  I would not think smoking years before would qualify, unless she has COPD or something similiar, but ask that question again.  The asthma is definitly something that must be discussed, but the pulmonary function testing is underway.    And Bleomycin toxicity is usually more common in higher (more cycles ) use.  But your wife is apparantly only going to get 3 or 4 cycles  (one CYCLE of ABVD is two infusions, or one month's worth of application).  

I received 6 cycles (6 months of treatment) and had had serious lung trauma decades before, and did have serious issues with Bleomycin, but the doctor never even reduced my dosing, said I needed to stay wide-open on the treatment.  I recovered normal breathing some time after treatment ended.  So Bleomycin is a trade-off.  Some writers here describe getting ABVD as AVD, minus the Bleo, or getting Bleo at half-dose.  Bleomycin continues to be popular because it is a higly effective cancer killer against HL cells.

Be aware that ABVD and CHOP are very similiar: Both contain Adriamycin.  And CHOP contains vincristine, but ABVD contains vinblastine, a virtually identical drug, with essentially the same side-effects.  CHOP contains Prednisone, a steroid, but ABVD does not have a steroid.  In practical terms, ABVD usually causes significant weight loss, since it has no appetite stimulant, whereas many patients on CHOP do not lose weight, or even gain weight.  When Rituxan is used, it is of course identical with ABVD or CHOP.

Except for highly aggressive strains that are late-stage, stem cell transplantations are virtually never used in first-line therapy.  SCT takes things to a whole new level of misery and complexity, and is not something I would request, unless compelling clinical reasons exist for it.  And SCT is always available as a second-line therapy (also called "salvage therapy") later if needed.

AVBD is indeed given once every 14 days, and all drugs at once; nothing is staggered, as are many other chemo regimines. Usually, two days after the infusion, she will return for a shot of neulasta in the tummy or similiar drug to boost her WBC count.

ABVD without Rituxan is usually a 3 or 4 hour day in the infusion chair. With Rituxan, expecially at first, this can be an 8 hour day.  I hope this clarifies issues a little. When you get her precise strain iof HL, please share.   But HL is virtually always beatable at any stage with first line treatment.  Nearly all of the life-threatening, highly-aggressive forms of Lymphoma are among the 40 or so strains in NHL.

As a well-informed layperson, it very much sounds like yor wife's case is early stage, relatively simple, and should be very easily put into complete remission.  I doubt globe-trotting at the world's premere cancer centers is necessary, but second opinions are always a good thing,

max

EB303
Posts: 22
Joined: Sep 2017

Wow Max, thank you so much for such a detailed response. I had indeed been reading about the successes of CHOP along with some negative comments about AVBD but I believe most were in conext of NHL strains. By negative, it was more about the side effects. Admittedly, I have been researching hard on NHL's due to the lesser statistical cure rates. HL is indeed higher and I find myself more at ease now that all signs point to the more curable prognosis. (As does my wife, too!)

Fortunately we don't need to globe trot to get in front of world class experts, being the MSKCC is in our back yard. We both work in midtown NYC and live in Northern NJ. Our GP essentially said that HL, albeit with various strains, is treated virtually the same way. But MSKCC is opening a fully functioning center in mid 2018 (theya re already doing scanning etc) just 10 min from our house. By then, she might be done with treatments but at least follow-ups are more accessible and it's at our disposal in case of recurrance etc.  So we'll still pursue the second opinion for sure.

I will keep you posted on her precise strain and thank you again for taking the time to provide all of this info.

Be well,

EB

po18guy
Posts: 989
Joined: Nov 2011

The R-CHOP is, as Max said, beginning to see increasing use against NLPHL, as that  disease is in a sort of gray area between the two categories of lymphoma (HL and NHL). It may be that it was originally misclassified due to lack of advanced testing capability when it was first identified as a separate type. NLPHL, as a rare sub-type, may ultimately be re-classified as a non-Hodgkin's Lymphoma, as more is known about it.

'However, your wife's is very likely one of the well-known types of Hodgkin's, and treatment is well established for those. Still, there are clinical trials of less toxic/more effective drugs and combinations being conducted, and it would certainly be worth investigating one of those., due to her smoking history. I am big on clinical trials, as one was very effective in my case and bought me the time needed for newer drugs and combinations to appear.

The advantage of a clinical trial is that you receive advanced drugs years ahead of their general availability. The downside is that they may not be effective - but this applies to all cancer treatment. If a trial drug/regimen is not effective, she can drop out and receive ABVD in any case. Just something to ponder, as that is how medical science is advanced.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3258
Joined: May 2012

Po:  We could just as easily be known as "rare of hair."

 

.

EB303
Posts: 22
Joined: Sep 2017

Hi Max & Po,

 

Sorry that I haven't checked in, in a while. You've been so helpful so far I feel you deserve to know how my wife is doing...

After an additional CT scan and an excisional biopsy at MSK CC, her dx is confirmed as HL. All signs point to classical HL but they are waiting on one last test for NLPHL. She will being ABVD treatment on Thursday. They said is the NLPHL comes back positive (which they consistently say they doubt) then they will add Rituxan to the cocktail.

They consider it Stage 2. The largest tumorous node was completely removed during the bioposy but there is one other in the region and another regional node of suspect that the scans detected. Her only symptoms to date have been a rash on her legs that, at times have crept up her arms (she is also itchy all over but the rash has been arms and legs only). The oncologist actually said he would be more inclined to a wait and see had it not been for the rash. 

All of this is in-line with what you've advised above, and I'm comforted in the tried&true appraoch. I'll get the exact strain on thursday when we return. The pathologist kind of dropped the ball with the final tests (should have been ready last Thursday).

My wife is anxeous and ready to start treatment. It will not be a fun few months, especially with two toddlers in the house but my hope is inspire her to remain strong and motivated. What's upsetting her most is the (potential) hair loss. Frown

 

po18guy
Posts: 989
Joined: Nov 2011

Please advise DW that lymphoma is rarely an emergency, and it is far, far better to nail down the subtype before treating it. The wrong treatment risks hurting her as much as the lymphoma. It took me two full months to get a correct diagnosis and I was then at stage IV with "innumerable" (the pathologist stopped counting at 50) tumors. There is no use in administering perhaps the wrong treatment out of a sense of some emergency.

Also, the stage, as mentioned, is not really important from the patient's standpoint. It guides the hematologist as to treatment strategy, but stage IV is just as treatable as stage I. Just let her know that it is critical to identify the enemy before treating it.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3258
Joined: May 2012

I'm glad you and your wife have clear diagnosis now EB, and can begin the march toward cure.

Classical HL is almost always put in complete remission (C.R.) by fist-line therapy.  Most (not all) stay in complete remission for life. As Po mentioned, Staging is not terribly relevant for most cases of HL. All that usually changes in Stage III or IV is the number of cycles, not the drugs themselves.  I am not forgetting the many here who have had a tougher time in first-line, or those who have had relapses; I am just sharing what is overwhelmingly most common and reasonable to expect.

NLPHL is almost never mistaken for Classical HL, so don't worry about that.  For one, NLPHL has lots of CD20 cells, which would be hard to miss, and NLPHL does not have the traditional, defining cells for cHL at all (Reed Sternberg).  NLPHL is mostly confused with various T-Cells and other very rare NHLs, so NLPHL is irrelevant to you and your wife from this point, 99% + liklihood.

Regarding Bleomycin, it does not harm most people, especially the younger or persons without pre-existing lung problems. But do report any severe, persistent cough to the oncologist if such manifests itself.  Hair loss on ABVD is more of a certainty than a potential, 95% lose all hair.  Most commonly, this occurs a few days after the second infusion (which is about 31 days following the first infusion, of course, since each infusion is two weeks apart).  But hair returns after cessation of treatment. 

After 2 or 3 infusions, anticipate severe weakness also. Many people write a few days after their first infusion and say "Gee..... this is nothing !"  That is later revised by almost everyone.

Bless her progress,

max

EB303
Posts: 22
Joined: Sep 2017

Thanks guys. Agreed about not rushing. We actually had a trip to Disney with the kids for mid October and they encourgaed us to go (and we did!) which is part of the reason for the month "off". Both the pathologist and oncologist have said they very highly doubt it will be NLPHL based on what they see ; they just hadn't stained a sample for it (yet). It was just disappointing that a place like MSK would let it slip through the cracks like that.  As Max said, it's very hard to confuse the two so I'm sure their gut is correct. But he wants to be thorough. I think my wife's age is also a reason for being meticulous. She's 46 which is in between the typical two age ranges for classic HL, but more in line with typical age for NLPHL. Of course those aren't hard & fast ranges, but still a reason to raise an eyebrow.

Anyway, she's in great hands. Her Onc has specialized in HL for over 40 years. MSK recently finished some rather sucessful trials (if first line doesn't 86 it) and he's careful about long term effects as well. (Our first opinion at Mt Sinai suggested ABVD with radiation, but MSK doc believes no radiation needed).  Here's an article about a MSK study on that if interested.

https://www.mskcc.org/blog/meet-msk-oncologist-quest-cure-hodgkin-lymphoma-fewer-long-term-side-effects

Thanks again. Will certainly check in to CSN as often as I can.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3258
Joined: May 2012

EB,

Since 1st infusion is can be reckoned as medical treatment Day 1, and second infusion is Day 15, most ABVD hair loss occures around Day 18. This is an APPROXIMATION for most. I had incorrectly indicated around Day 35 above.

Traditionally, Stage III or IV cHL pateints receive NO RADIATION, unless some mass needs debulking.

MSK is therefore closer to normal recommendation.   I have not read the link yet but will.  Thank you,

max

EB303
Posts: 22
Joined: Sep 2017

No worries. Unfortunately not much of a difference either way. 

As for the no radiation...makes sense because stage III or IV is generally more spread out so greater risks of side effects (both long and short term). Some docs feel that stage I/II could use localized radiation - I guess avoid elongated chemo treatments? But I like that our doc is conscious of her long term health too.

LacieAnn728's picture
LacieAnn728
Posts: 34
Joined: Oct 2017

i been reading through this thread & have to say it sounds like she has great doctors and that is a relief when you are going through something so scary! I will say that ABVD which is what I was on has minor side effects basically stuff you can handle. With the Bleomcyin they might only give her a few doses and take it out. They did that with me. Wishing your wife & your family best wishes and hope you get all your answers soon! 

EB303
Posts: 22
Joined: Sep 2017

Thanks LacieAnn! Wishing you all the best as well.

Cheers,

EB

EB303
Posts: 22
Joined: Sep 2017

Just wanted to pop in an update to complete the thread. Her official dx is Lymphocyte Rich Classical Hodgkin's Lymphoma.

From what I (very quickly) read, LR occurs in only approx 5-10% of cHL so a bit rare. Also of note, sometimes NLPHL is misdiagnosed and later found to be LRcHL. This makes sense to me as they kept saying "suspicion" of cHL but really needed that last NLPHL test results. Her doc was very meticulous about this before treatment.

Her first treament was this past Thursday. She handled it well but side effects seem uncommon in both timing and areas effected. We were under the impression the day after would be worst, then following two days only slight improvements but then by the 4th day should start trending back to norm. It's just the start but it seems the opposite. Only effects so far: very sensitive inside her mouth and throat; and dizziness. Fatigue is on and off.

1 down, 7-11 more treatments to go!

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3258
Joined: May 2012

EB,

Do not read anything into her timing of reactions. The main thing that can cause alarm is fever, so monitor that.   I understand you are using ABVD.  CHOP is a bit more predictable, in that the Prednisone cycle of days is fairly standardized.  But as we have discussed, ABVD has no Prednisone or steroid, so the reactions are more random.

My R-ABVD infusion day lasted about 8 hours, and when I got home around 5:30 PM, I just crashed and slept until the next morning, except for occasional runs to the bathroom to pass that massive amount of fluid.  Urine runs pink for 24 to 48 hours.  My worse days were probably 2 through 4, but memories fade.

Also, as I mentioned, after two infusions my experience seemed mild enough for me to go back to work, which lased about 2 weeks. After 4 infusions, the bottom fell out, and I just slept all day, every day.  No way I could have worked part time, from home, anything.  I slept around 17 hours every day, regardless of where I was in the cycle.... Most sleep less.

Do not read a ton into her first few days or even weeks.  Effects are cumulative, and worsen for most. I'm just being honest.

Mouth sores are common, but I never got any; I have no idea why. I did not take any special precautions for them.  Some patients develop what is called Flu-like Syndrom -- I did.  I felt like I had the flu for 5 months. Yuck, I know.

I also lost all sense of taste, not the norm, but some taste changes occur for most; the so-called "metal mouth" sensation. This by itself will reduce appetite.  I did not get "metal mouth," but rather "salt mouth": my mouth felt full of salt all the time.

My other worst reaction was neuropathy: numbness of hands and feet. This is worse in the cold.  Mine never cleared, 5 years later. Most neuropathy does clear for most individuals who develope it. Mine did mitigate a little after about a year.   And my taste sensation did return after the end of treatment.

Dizziness is less common, but does not surprise me.   Let her rest all she wants for these months. This is not fitness training time, this is live through an ordeal time.  Some writers (NOT you !) seem to think that it is "moral weakness" to get physically weak; that they have to not let the treatments affect them.  This  is an absurd and medically wrong view of things.  Prep for a marathon later.  All the sleep she wants she should get.  Expect it, and then possibly there will be nice surprises.

There is a universal truism that is worth mentioning now also.. Oncologists know that severerity of side-effects (or lack thereof) are no indication of chemotherapy effectiveness.  That is, a patient who has severe side-effects might get poor results agains the disease, and a person with no side-effects might have spectacular results. Or vice versa. Side-effects just are not linked to how successful treatments are, one way or the other.

max

EB303
Posts: 22
Joined: Sep 2017

Sorry I essentially fell off this grid over the past few months. While my wife was battling, I was essentially a single parent and didn't have much time sign on. Fortunately, good news to report! Wife's laft treatment was in mid April. First scans, post chemo, were in May and came back all clear.  She's feeling better and back to work. Next scan in Sept.

I want to thank those of you who responded to all my questions and concerns, especially Max & Po. You both put a lot of thought and time into your replies and they were incredibly helpful. I signed back in to CSN for 2 reasons - First to say thanks and provide an update. Since you were kind enough to help I wanted to at least let you know how it has panned out to date.

Second reason -  I will start a new post with that....

illead's picture
illead
Posts: 834
Joined: Aug 2012

I know how you feel, I am the caregiver also, my husband says he thinks in some ways it is harder on us.  I am so happy that your wife is doing so well and that you are getting on with your lives.  Thank you for the update.

Becky

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