Lymphoma vs Sarcoid

po18guy said:

Well pilgrim...

I have had more than I can remember. Depends on your pain tolerance. With local anesthetic and some other form of sedation/pain relief, I have found them to be about 2-3 seconds of strong, but dull pain. Then it stops. Two samples, as I remember. The last one, I 'John Wayned' it and just went with the lidocaine injection at the site. Walk in-walk out. The worst I ever had, I was sore for almost two weeks, but that was the only one. The rest were slight discomfort to none at all afterward. But I tend to be rather numb in any case - even below my shoulders.

I might be a big baby when it comes to pain. Lol doesnt sound pleasant. The nurse mentioned that they will use versed most likely, so I hope that it won't be too bad!

I'm not going to lie. I've been doing well, but I'm nervous and scared of the tests next week and waiting for more results. I'm ready to know all the details and tackle this but at the same time I'm scared. Was anybody else like this?

Max Former Hodgkins Stage 3 said:

Sundry and various....

TN,

My lead oncologist for my first-line treatment was an established guy with decades of experience, Ivy-trained, and a clinical and actual genius, but he was a tad 'old-school' in his medical attitudes (he had/has five active Board Certifications, for instance).    When my wife and I first met him, he had my biopsy results in hand, had mapped out my treatments (with a calander printed for each appointment), and gave me handouts on every drug to be employed, technical data on the disease, as well as on all relevant potential side-effects, and so forth.   He gave me, unasked, two perscriptions that were signed by him before we arrived:   One was a moderate pain killer, the other was lorazepam (Ativan).  He said, "You will likely need these; most of my patients do, but use only as needed."   

The Ativan I used pretty much for my six months of treatment.   I have a totally non-addictive personality and physiology, and walked way from the Ativan with no issues at all, but if you do come to feel it would be benefical, know that it can be habit-forming in some individuals, and proceed with due caution.    I developed a condition known as 'Flu-like Syndrom' after my second infusion, and had it pretty bad, continuously, for the next five months.  Essentially, a patient with FLS feels like they have a bad case of the flu, especially the muscle aches and weakness.   I tried OTC NASIDs at first, but they would not touch this pain, so the perscription pain-killer was clinically necessary in my case.  I am not meaning to worsen your concers; Flu-like Syndrom occures in less than 10% of patients on combination chemotherapy regimens, and virtually all patients get a random, hodge-podge set of side effects.   Particular drugs are linked more strongly to specific side-effects than others (Vinblastine and Vincristine routinely cause neuropathy, for instance), but doctors will tell you that which effects any given patient develops is un-predictable and in-explicable.  Virtually all side-effects are manageable however (e.g., nausea, low WBC counts, etc., are easily controlled today, but a few, like severe fatigue and loss of taste, are less addressable, but almost always mitigate after chemo ends.

When I went to leave this first-ever appointment with my oncologist, he mentioned, alsmost as an afterthought, that before I departed I needed to follow one of the NPs for a bone-marrow biopsy.   I walked into this 'cold.'   The NP asked if I wanted a pain reliever, and I said yes, and about ten minutes after taking it, she came back and did the proceedure.  If you have ever seen the classic Pulp Fiction,  think of the scene in which the guy tells the other,  ' We 'bout to get Medieval on you a-- ! '   Like much in modern medicine, it was relatively primitive in technique.  But, the entry point did not bother me for more than a day or thereabout.   And it ws a very brief proceedure, maybe 10 minutes tops.

In summary, my reasoning is that when offered a pallative while dealing with cancer, use it.  If you hurt, take a pain reliever.  If you are exhausted, sleep.  Not profound observations, but many feel they have naturalistic/homeopathic remedies for these issues. However, these are mostly either quackery, or something that worked at lrandom for one person, but not most.   My chemo expeience was likely worse than most (I did six months of R-ABVD, the most common regimen for Hodgkins-type), and my particular side-effects were loss of all sensation of taste, loss of ALL hair (including eyebrows), severe weakness, neutropenia, severe neuropathy, Flulike Syndrome,  Chemo Fog, and blackening of the nails.  Most patients will experience fewer difficulties than I did.  And bottom-line, I was cured, so I  give thanks, and would do it again today,

 

https://chemocare.com/chemotherapy/side-effects/flulike-syndrome.aspx

max

Thank you for all of your explanations and recommendations and sharing your story with me. I will be sure to ask for the Ativan if I feel I will need it. I don't have the addictive personality, either. I didn't like the pain meds they gave me for my surgery and only took it a couple of days. Your responses and information are really helping me through this journey and I appreciate it more than you know! I will keep updated on the biopsy tomorrow and scans this week. 

Lauren

Well, I made it through! It was certainly painful, but like everyone has said, it didn't last long. I'm glad to be done with that part of things. Next step is a PET scan tomorrow afternoon. One day closer to a full diagnosis...

ShadyGuy said:

Radiation

IMHO it seems unlikely you will receive radiation. Radiation is most often only used on stage I disease or in one local area. Lymphoma is a blood cancer and can appear anywhere there is blood. This means a systemic treatment like chemo generally works best. Also, the only way lymphoma can be positively diagnosed is through biopsy. PET scans, ultrasound etc. are screening tests only. Such tests help identify how widespread the disease is but do not diagnose. Remember - lymphoma is very treatable even at stage IV. As per sarcoid I have no idea. Thinking of you as you get your PET.

Thank you for your thoughts. We do know the biopsy is a confirmed diagnosis of lymphoma. I saw my path report today, but honestly I don't know what all of it means. A part of it stated classical Hodgkin's, but it also mentions other types. It focused on CD30 and CD15 and that the pathologist agrees it is a CD30 positive lymphoma. The biopsy is still being tested at the Mayo Clinic. My PET scan showed nothing new other than one lymph node in my neck that I was able to feel after my excision. The bone marrow biopsy was clean and showed no bone marrow involvement. I had an echo today and I will see the oncologist Monday afternoon. Praying to have a final diagnosis ASAP. This waiting may be the worst part thus far! 

ShadyGuy said:

Great news …

that the bone marrow was clear and no new hot spots on the PET. That means a lot! If it turns out to be classical HL there are several people on here from whose experience you can benefit. Myself I have follicular which is a different animal altogether so I have little to offer. I will say that your team seems to be doing a very thorough diagnosis and that is comforting. It is very important to know exactly what you are dealing with so that the optimal treatment can be administered. All my best wishes! 

Thank you! Your positivity helps me be more positive as well!

PBL said:

Yeah...

If it does turn out to be T-cell, you'll need to seek a T-cell lymphoma specialist. And I have no doubt po18guy will come to the rescue if need be.

Do keep us posted on what the hematologist says on Monday.

PBL

Would you suggest a well renown cancer institute?